We are indeed much more than what we eat, but what we eat can nevertheless help us to be much more than what we are —Adelle Davis

Right now Wayne is what you might say, “a little on the skinny side”.  Wayne needs to be much more. It doesn’t seem likely he will be much more eating a measly 300-500 calories a day. The goal for him is to eat a minimum of 2,000 calories a day (I provide a good example of what he must do. I tell him, “do as I do”, but alas I am doing all the eating, well over 2,000 calories and he is not!!!!)  Since we cannot shove food down his throat, we can do the next best thing and tube it down his throat. Even with the nasogastric tube (a tube that goes from the nose to the stomach) he will still need to eat and drink, which he can easily do with the tube.  Wayne will now receive much more help, calories and protein and soon he will be much more than what he eats, he will be a strong, muscular dude.  Bon appetit!

 

“I tell you, boy, every time, The feelin’ sure is fine. Just move me on down the line”…ZZ top lyrics

Do I need to say more?  He has 9 days left of antibiotics, but he is doing so much better (the fluid in both right and left lower lobes of lungs should slowly reabsorb into the vascular system)He has been moved back downstairs to the BMT unit.  Yes sir, the wheels keep rollin’ I tell you all, this time the feelin’ sure is fine. Just move Wayne on down the line.

“YOU DID IT, I Thank you with every breath that Wayne takes”

What an amazing army he has!!!!! You are the very best!!!!!  Thanks to your help, Wayne is now able to do the work of breathing without mechanical assistance.  He still needs to have lots of oxygen, but he can take his own breaths!  Yesterday, with the aide of CT (to avoid puncturing the lung) they were able to pull out 650cc of fluid from his right lung.  What exactly caused the pneumonia is still unknown, we are waiting for lab results to come back, but he is stable.  His question after they completed the procedure “did they get it all, am I out of the woods?”  To which I reply, You are doing a great job Wayne, with the help of your army, the march is on.” We know he is not quite  “out of the woods” but he is on the path. You’ve got him covered, thank you, thank you – Now…. take a deep breath.

Calling all soldiers to arms – HELP!!!!!!!!!

I know that you have all been working for Wayne’s benefit.  I am asking for overtime.  Wayne needs a little help –no Wayne needs a lot of help.  Could you please say an extra prayer, send more positive thoughts and well wishes.  He has developed pneumonia, which the physicians are treating like SARS (No lesson today).  We are watching carefully, from the ICU, to be sure that his assisted breathing can hold out until the antibiotics can really do the job.  In the meantime, PRAY, PRAY, PRAY, BEG, BEG whatever. PLEASE, oh DEAR GOD PLEASE!!!!!! 

“Some like it hot, Some like it cold, this is what Wayne’s got, and it’s getting old” – Cold Autoimmune Hemolytic Anemia (cAHIA)

I am not sure how many of you got this, but if you guessed hemolytic anemia YOU ARE RIGHT!!!  BUT, did you guess cold autoimmune hemolytic anemia?  Well, if you were a REAL doctor, instead of playing doctor, you would have been asking yourself, is this warm or cold hemolytic anemia. And if you were a real doctor, you knew you would have to wait for the lab results to confirm.  So here are results from some of the lab tests the real doctors ordered:                                                                                                                     • DAT (direct antiglobulin test) has come back positive, which is a test used to find out whether a hemolytic anemia is immune-related or not.  A positive DAT confirms Wayne’s hemolytic anemia is a result of an auto-immune problem.                                                      • With Antisera reacting to complement –positive for M this is a matter of complement, a protein that binds to the red cells. Having this is not good, because complement pokes holes in red cells! That’s where the hemolytic part comes in with cold AIHA – the red cells get busted open by complement, right in the circulation. (FOR all you out there who can speak Medical talk – Cold agglutinin disease is typically characterized by the presence of IgM antibodies  directed against polysaccharide antigens on the red blood cell surface. Right …?)

Immune hemolytic anemias referred as autoimmune hemolytic anemias (AIHA), come in two kinds: warm and cold. They are named that way because the different antibodies in each type react best at different temperatures. There are a couple things going on in cold autoimmune hemolytic anemia (AIHA): 1) the patient is making antibodies against his/her red cells, and 2) there is complement fixed to the patient’s red cells. The possible causes are numerous and include infections, blood disorders and the good old “idiopathic” category (or, We Don’t Know What Is Causing It But We Don’t Want To Sound Silly).  In Wayne’s case, you can add to the list of culprits cGVHD (chronic graft vs host disease).

Wayne is making  IgM antibodies. These antibodies bind best at cold temperatures. So, did he get really cold? NO. Oh  I hear many out there saying, “it’s not surprising Wayne developed cold AIHA,  Peeches would never turn on the heat.”  If you could see him now, it would be hard to believe that Wayne could be producing any IgM antibodies, the way he likes to bundle up. Hmm…Wayne has always had trouble with cold hands, I wonder if that was a predisposition to developing cold AIHA, (a thought of mine from left field)???

So what are they going to do!!! They are giving him a special medicine that will bind to the  antibodies, Rituximab.  Rituximab targets a protein on these cells, which are part of the immune system (the body’s defense against infections and other harmful substances) by temporarily removing the “arrant” cells. This takes about 6 weeks, so until that time he will continue to receive transfusions every couple of days. BUT…..drum roll……. he doesn’t need to stay in the hospital for all that time, so maybe if the stars align we will be home before.

“Let’s play…doctor” – diagnosising

I are going to go through some of the steps a doctor could take to arrive at a diagnosis.  ***Disclaimer and apology to all my terrific friends who are also physicians: Please know that the following is said with tongue in cheek as I do know that this is oversimplification of all that goes into making sound medical decisions, not to mention the years of education and experience, but this is just for easy reading.                                                                Now that you have put on your white lab coat, your day starts off with “rounds” (this is where you get a report on the patient). Wayne, our patient, presents with a hemoglobin of 6.7.  He was last transfused 2 days ago.  He has elevated LDH (717), decreased haptoglobin, elevated bilirubin, Coombs test is positive.    Off you trot into the room, of course, only after you stop to put on your protective clothing.  Yes, you see for yourself, indeed the patient has jaundice, his appearance supports the likelihood of malnourishment even though he has generalized edema, and the patient is complaining of being tired. “Ah-ha: you, the reader, are saying,some of this has already been in the blog, so I can piece this together”.                                                                                                                               • Wayne has had nutritional supplementation and is now on a low microbial diet with additional supplements. Thus, his overall nutritional status is improving.                               • Edema: abnormal accumulation of fluid in the interstitium, which are locations beneath the skin or in one or more cavities of the body. It is clinically shown as swelling for which Wayne is being given diuretics (lots of going potty), he is loosing water weight and is improving. His extremities, back, abdomen and face are not as puffy and swollen. Still difficult to assess healthy weight gain given fluid but appearance indicates improvement.           •  Hemoglobin normal range for adult male is 14-18gm/dl.  (So you, the reader, may not have remembered the exact value for the hemaglobin – but you know it’s low.)                    • Continued need for blood transfusions – bone marrow functioning but cannot keep up with demand.                                                                                                                           • Jaundice: the yellow color of skin, mucous membranes and eyes when there are excess levels of bilirubin in the blood                                                                                                  •  Bilirubin – the yellow chemical in hemoglobin, the substance that carries oxygen in your red blood cells.  RBC’s are broken down and then processed by the liver. With accelerated destruction of RBC’s, hemolyosis, the liver cannot handle the volume of blood cells as they break down, bilirubin builds up in the body and skin may look yellow.            • Hemolyosis- the premature rupture or breaking down of the RBC’s.                                 • Coombs test positive:  A positive Coombs test indicates that an immune mechanism is attacking the patient’s own RBC’s.                                                                                     We haven’t talked about this one but it is helpful for you to know,  as this is a lab test often run if you are having any heart damage, muscle damage or such:                                        • LDH (lactate dehydrogenase) – Normal LDH levels range from 140 units per liter (U/L) to 330 U/L  and becomes elevated in response to cell damage. LDH is abundant in red blood cells and can function as a marker for hemolyosis.                                                              By now, some of you may have guessed, yes I have given hints, and of course there are some real smarty pants out there, but for the rest of us playing doctor we say “Hmmm” …., I think I can guess at the reason for his jaundice and fatigue, but I don’t know why this all happening”. So like many doctors you do the first thing that comes to mind, order additional labs to see what up!  

“Will the real Mrs. Cederholm please stand up” – Steroids

“Whoa, whoa there,  you shouldn’t be giving Wayne 95mg of prednisone.” (Prednisone is the name of the steroid he is taking). “Well Mrs. Cederholm,”  the pharmacy tech starts out. I am looking around forthe”  Mrs. Cederholm, oh oops, I realize that he is talking to me, Mrs. Cederholm.  After 35 years of being “Peeches Cederholm”,  I still cannot believe I am old enough to be “the”  Mrs. Cederholm.  The pharmacy tech goes on to explain that the oral and IV forms of the steroid prednisone are not equal, it is not a 1:1 IV to oral dose ratio.  The IV dose is much stronger, quicker to be absorbed, ……..yada, yada, yada, so you do not need as much. “Holy cow” that would mean that when we started him on the steroids, if had he been taking an oral dose, he would have been taking 175mg. every day. Yikes!! hummmmmmm…………Isn’t it nice he has been tapered down – THANK GOODNESS!!!!   And nice little pharmacy tech offers offer the astonished old Mrs. Cederholm a seat.

“Mangiare” – eat up

It’s all up to him now. They have stopped his TPN, his meals by infusion. He will have to actually cut up the food, lift the fork to his mouth and eat, Eat, EAT. For my part, I provide a good example everyday and show him how easy it is to eat, Eat, EAT.  He needs a minimum of 1,000 calories per day.  I don’t know why this is so hard, I manage to eat that at every meal. He needs to eat small frequent meals. I need to eat less frequent meals and they should be small. We could really use Grandma Simonini right about now, “Whats a matta you!  I make-a apple pie for you. Mangiare, MANGIARE!!”

“So if it is good enough for Lance Armstrong, why not Wayne? – Steroids

Lance Reynolds, Ben Johnson, Barry Bond, even Jim Thorpe, the list goes on and on…. all did amazing things with the aid of steroids. So wouldn’t you think, with all the steroids Wayne has been taking, he would be the new Mr. Universe? (Yah – I guess that was too much of a stretch, there really is a limit to the human imagination!)  But really, “where do they buy their stuff?” Guess what: there are different types of steroids.  NO KIDDING!!!!!                                                                                                                                               There are two types of steroids naturally present in the body. The first are corticosteroids, which are produced in the adrenal gland located above the kidney. Corticosteroids produced naturally by the body include aldosterone and cortisol. Cortisol plays many roles in the body, including serving as part of the body’s stress response and to help decrease inflammation. Corticosteroid drugs, like prednisone and dexamethasone, which Wayne has been taking, are used commonly in treatment of asthma, rheumatoid arthritis, infections, inflammatory bowel disease and a host of other illness stressing the body and producing an inflammatory response, swelling. After long term steroid use along with the high dosage given Wayne, the steroids begin to actually “feed on” the protein found in muscles, attacking the proximal muscles first, eating these big muscles, and causing the weakness Wayne is experiencing. Fortunately, this is reversible!!! For now, until the steroid dose is dropped down, down, down he will have this muscle wasting, weakness and fatigue.                                                                                                                                     The second group of steroids, the androgenic/anabolic steroids, are hormones made in the body to regulate the manufacture of testosterone in the testicles and ovaries. The androgenic part of testosterone is involved in developing the male sex characteristics, while the anabolic part is involved in increasing the amount of body tissue by increasing protein production. The pituitary gland, located at the base of the brain, helps regulate testosterone production and hormone secretion. Growth hormone and follicle stimulating hormone (FSH) are among the hormones that stimulate testis and ovary function and are two of the many hormones secreted by the pituitary. Anabolic and androgenic steroids are available as prescription medications to be used in cases in which the body does not make enough hormone and supplementation may be required. When used in a well-nourished body, anabolic steroids will cause weight gain primarily due to an increase in muscle mass.This group of drugs is often used illegally, and abused to help increase athletic performance and improve body appearance, just ask Lance Armstrong!!!                       Now wouldn’t it be great if Wayne could have a little bit of that magic?? I guess that would be illegal and he would get caught doping.